Friday, 2 September 2016

Burning Legs and Itchy Skin - Fibromyalgia, Chronic Fatigue Syndrome - or both?

I was formally diagnosed with Fibromyalgia in 2010, but have probably had it all of my life.  Chronic Fatigue Syndrome was added to the list earlier this year.  I should be used to the constantly changing symptoms by now - and I am certainly better at coping/pacing myself so that I can make the best use of my limited energy.  However, regularly my body decides to have a 'flare' - where one or more symptoms are worse than usual, and I struggle to cope.  The only thing that time and experience has given me is that I know that this flare will pass - I just need to take any medication that will help make me more comfortable, and distract myself with activities that allow my body to rest.

Therefore, here I am, fairly early in the morning, after a very disturbed night - sitting on the sofa, watching tv and typing away on my laptop.  I feel generally very sore and stiff, which is usual for me, particularly first thing in the morning.  However, the two symptoms which have flared this time are leg pain and itchy skin.

Leg pain - they are burning; they literally feel on fire.  The pain is not eased by resting or moving around.  It is always worse lower down, and will probably spread into my feet.

Itchy skin - again, is worse lower in my legs.  This is normally just in the evenings and I wake up feeling more comfortable.  Last night though it continued and was bad enough to keep waking me up.
Both of these symptoms are very common in the Fibromyalgia community - I see them mentioned all the time on social media.  I have a very enquiring mind and wonder WHY these particular symptoms occur.  Also are they just symptoms of Fibromyalgia - or could they be part of my Chronic Fatigue Syndrome too?

Well, I have just done a Google search and burning legs is a very common symptom - but there are no real reasons given for this.  A condition called Peripheral Neuropathy is mentioned, which is often seen in Diabetes, and there are lots of different medications, particularly in America.  However, I get the message that doctors do not know why it occurs and there is no one effective treatment.  I am not willing to take medication unless it becomes a constant part of my life, so hopefully my usual daily routine of regular movement combined with rest will see it easing later on.

I have now done a Google search in relation to Chronic Fatigue Syndrome - and, yes, it is a common symptom with that too.  I have no hope!  The main difference that I noticed immediately between CFS and Fibro is that the symptoms with CFS (or ME - that should be another blog post - are CFS and ME the same or completely different?) seem to be far more severe and life-changing, and the sufferers are very descriptive in how they are feeling.  It does seem common that people will be diagnosed with both conditions.

Here is a discussion about the symptoms - Healthrising forum

Are you as confused as me yet?  Imagine actually having these very long lists of symptoms, which change constantly - and every day, with no real hope of recovery?

Now, the itchy skin - mine has eased a bit with some distraction and taking an allergy tablet when I first got up.  I wonder whether this is linked to the burning pain - is it something to do with nerves, as mentioned by a few of my doctors in the past?

My Google search this time found lots of useful information about why it may be occurring and how to treat it.  It seems that it is related to nerve problems, which makes sense to me.  Extreme Itch in Fibromyalgia and Chronic Fatigue Syndrome

(To make my suffering worse, it is also common in menopause - and I have been in perimenopause for a while, and, of course, I also have Psoriasis.  I should be used to itchy skin by now, but when it really hits it is almost unbearable.)

There you go.  A blog post with only a small amount of useful advice, but a lot of confusion.  This is part of daily life for those with Fibromyalgia and/or Chronic Fatigue Syndrome.

I would love to hear from anyone who can relate to how I am feeling this morning - leave a comment or email me at

Ali x

1 comment:

  1. Ali, I read this post with great interest, and I'm so sorry to hear you are suffering so much at the moment. I haven't come across the burning legs symptom before, and with my M.E. I certainly haven't had that, although I do get some itching at times. I do suffer from peripheral neuropathy but that's a side effect of my chemo, which I hope will eventually pass off, but there's no guarantee of that. I have to sleep in socks because my feet are so sensitive and rubbing against the bedding wakes me up. As for the CFS/ME debate, I hate the term CFS as it really trivialises our condition and reinforces the idea that we are "just a bit tired all the time" when it is in fact a serious, multi-system disease, with a neurological categorisation under the World Health Organisation. There has been way too much politics involved with it, and the "rebranding" of it by the people trying to push the psychological paradigm is quite shameful. So I always stick with "ME" and not "CFS."

    One thing can be said about it (and presumably FM as well although I have no experience of that, thank goodness) - life is never dull! You never know which symptom is going to come to the fore at any one time. I am feeling pretty good at the moment and since getting rid of my troublesome colon (ulcerative colitis for many years) after bowel cancer last year, life has not been so good for ages. My surgeon said I'd be bound to feel better because the UC would have dragged me down a lot. Having more than one chronic condition does tend to make each one worse, doesn't it, because your body never seems to get the chance to catch up with itself!

    Wishing you all the best, and hoping for an easier time for you in the very near future - flares we can do without.



Thank you lots and lots for your fab comments. I read and treasure them all. Ali x